My brother, Garry, suddenly died on November 16, 2022, although I realized his health was failing due to COVID-19, pneumonia, and sepsis in late August 2022.

Garry was born on April 27, 1956.  I was 4 years old at the time.  My early memories of Garry were that he was always sick and in the hospital.  Finally, he was diagnosed with “idiopathic mental retardation” around kindergarten age.  Yes, I know it’s a term no longer used, but remember it was early 1960s.

 Garry lived for many years in an ICF for individuals with developmental disabilities.  He needed 24-hour supervision.  It wasn’t until early adulthood, when I was engaged to be married, that he was diagnosed with fragile x syndrome and autism.  They did not know how to test for this when he was born. 

My father died at the age of 47.  My mother struggled for many years prior with alcoholism and finally reached sobriety after my father died.  Unfortunately, she also had other mental health issues.  Even after my brother entered the ICF residential facility, I took on many caretaking roles, which is like an assisted living facility for individuals with severe disabilities.   People often describe my brother as “quite a character.”  He could be very loving and sweet, but he also was self-abusive (hitting himself, biting himself because he had limited communication skills, and self-injurious behavior is a characteristic of the syndrome).  He had a sense of humor, and if he liked you, he liked you; if he didn’t, he ignored you.  He loved pop, coffee, McDonald’s French fries, and rides down Rockside Road.  That made him very happy. 

I pursued a career in special education and advocated and cared for my brother for many years; I was his legal guardian, as well as his sister.

When people found out that Garry died, I had several people make comments like: “It’s a blessing that he died; now you can go on with your life.”  I didn’t reply, but I wanted to say I had a life this whole time; Garry made it better.  My cousin told me, “you sacrificed your whole life for your brother; now you can do what you want.”  But it was really my brother who sacrificed his life.

I had a successful career working with children and families with disabilities.  I had so much knowledge and skills.  What would my brother’s life have been like if I had known some of those skills earlier?”  What if there had been more services and supports like there are now for families?  What would he have become if he didn’t have Fragile X and autism?

I will never know the answers to those questions.  Perhaps I am not supposed to know those answers.   I don’t understand the many things that happened in my family’s life.  I had so many conversations with God about it and still don’t know why.  However, I do know that my life has been infinitely better because of my brother and because of all the children and families that I worked with throughout my career.

I have lost many people in my life.  My parents, very close friends, and I thought I would experience grief the same way I did for all those other losses.  This is so different and so much harder in so many ways.  I knew him my whole life, and there was a tremendous void after he died because I didn’t have to constantly worry about what might happen, making decisions for him, and advocating to ensure he was getting the care he needed.

I know he is safe with God.  I have no idea what heaven is like, but I sure hope there is lots and pop and coffee and French fries there.

Written By: Kathy Wojciak